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TOFS Awareness Week 2024

Full schedule released for our Improving Care in OA/TOF seminar

We are pleased to be able to release the full schedule of talks for our upcoming “Improving Care in OA/TOF” seminar on the 18th November. Scroll down to meet our speakers. Click here for directions and travel info.

11:00

Welcome
Paolo De Coppi, Professor of Paediatric Surgery, Great Ormond Street Hospital

11:10

Engagement in research studies and developments to improve care and outcomes
Graham Slater, TOFS trustee and board director of EURORDIS (Rare Diseases Europe)

11:20

The TOAST trial – Does anti-reflux medication prevent strictures?
Nigel Hall, Professor of Paediatric Surgery, University of Southampton

11:40

The OCELOT project – Core outcome set for OA
Rebecca Thursfield, Paediatric Respiratory Consultant, Alder Hey Children’s Hospital

12:00

Progress on tissue engineered oesophagus
Natalie Durkin, Paediatric Surgical Registrar, Institute of Child Health, Great Ormond Street

12:15

“OA/TOF and the lost twin” hypothesis
Charles Shaw-Smith, Consultant Clinical Geneticist. Royal Devon and Exeter NHS Trust
Bryn Webb, Associate Professor in the Division of Genetics and Metabolism, University of Wisconsin School of Medicine and Public Health

12:35

Meet Charlotte Fisher, TOFS Celebrity Ambassador

12:40

Lunch and poster session

14:10

Eating, drinking and swallowing difficulties in OA/TOF: what does the research show?
Alex Stewart, NIHR Clinical Doctoral Research Fellow, Specialist Speech and Language Therapist, Great Ormond Street Hospital

14:30

International developments relevant to OA
Graham Slater, TOFS trustee and board director of EURORDIS (Rare Diseases Europe) 

 

14:45

Parental mental health in the context of OA/TOF and recommendations for digitalised psychological support
Vuokko Wallace, Clinical Psychologist, University of Bath

15:05

Multi-national Data collection – its role in improving outcomes
Simon Eaton, Professor of Paediatric Surgery and Metabolic Biochemistry, UCL Great Ormond Street Institute of Child Health

15:20

TOF MDT clinic and pathway – providing holistic care to TOF patients and families
Dhanya Mullassery, Consultant Neonatal and Paediatric Surgeon, Great Ormond Street Hospital

15:40

Q&A Session

16:00

Close

Meet the speakers

Graham Slater

Graham Slater

Graham is a TOFS Trustee and patient advocate. In 2023 Graham was elected to the board of directors of EURORDIS (Rare Diseases Europe). A a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally.

Nigel Hall

Nigel Hall

Nigel is Professor of Paediatric Surgery at University of Southampton and Consultant Paediatric and Neonatal Surgeons at Southampton Children’s Hospital where he is the clinical lead for Neonatal Surgery. He is the national surgical speciality collaborative research lead for paediatric surgery with a focus on developing multicentre randomised controlled trials in children with paediatric surgical conditions.

Nigel is also the chair of the Network office of the European Paediatric Surgeons Association and co-Chair of the TOFS research sub-committee. Current research roles related to OA/TOF include being co-Chief Investigator of the TOAST trial and a member of the steering group of the OCELOT study

Dr. Bryn Webb

Bryn Webb

Bryn Webb is an Associate Professor in the Division of Genetics and Metabolism at the University of Wisconsin School of Medicine and Public Health, and a core faculty member in the UW Center for Human Genomics and Precision Medicine. She is a board-certified clinical geneticist, clinical molecular geneticist, and paediatrician that focuses her research on identifying genetic etiologies of rare disease including with a concentration on rare congenital anomalies.

She is now expanding her research into the study of tracheo-oesophageal fistula and looks forward to meeting participants at the conference.

Alex Stewart

Alex Stewart

Alex qualified as a Speech and Language Therapist in 2001 from Manchester University, UK. She has worked with children with feeding difficulties for 20 years at a number of children’s hospitals and has a particular interest in feeding difficulties arising from cardiac and structural abnormalities. She is currently undertaking a PhD at University College London, investigating feeding and swallowing difficulties in children born with oesophageal atresia/tracheo-oesophageal fistula and undertakes clinical work at Great Ormond Street Hospital. 

Alex is chair of the Paediatric Dysphagia Clinical Excellence Network and scientific chair of the UK Swallowing Research Group.

Vuokko Wallace

Vuokko Wallace

Vuokko Wallace is a clinical psychologist and lecturer at the University of Bath. She also conducts research at the University of Eastern Finland. Dr Wallace trained at the University of East London (DClinPsych), and has worked as a psychologist in the UK, Finland and Uganda. She is specialised in paediatric health psychology and qualitative research methodology.

Dr Wallace’s publications include research into mental health and wellbeing in families affected by OA/TOF, and patient-led research. Dr Wallace was born with OA/TOF, and she holds several dual roles as both a clinician and a patient representative. These include providing a patient perspective and consultation to OA/TOF related research; and memberships in the TOFS Medical Advisory Group, and the ERNICA QoL working group.

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